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This isn't my blog, it's Zack's. Zack arrived here seven weeks early, he had no heartbeat and wasn't breathing. He suffered catastrophic damage to his brain, he has cerebral palsy, problems with his hearing, vision and feeding. Our lives are both challenging and extraordinary. He is a gift. I hope that for whatever reason you find yourself reading this blog it can go some way to help those in the same situation and some way to remove the cloak that covers parenting a child with disabilities.

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I did say pigeon poo

We've all been off on a little jaunt to Sussex. After almost a year and half we returned to the Advance Centre to continue with the therapy that we started with Zack when he was a baby. So I don't bore you please look at my previous posts about this therapy if you want to understand what it's about.

Anyway, we had an extra companion this time, Scazzzahhhhhh. Double trouble on the journey down, which wasn't too bad as journey's go. I also booked us into an apartment for three nights to give us more space and a kitchen area to do his lordships blended diet. Well, you can't exactly mix up a shepherds pie concoction in a travel tavern, premier lodge....whatever those places are called.

Apartment was nice. Girl let us in, all looked good, she said goodbye, we settled in by shoving our backsides on the sofa and trying to get the TV to work. Dan came back five minutes later to say that he had dropped the keys down the lift shaft. Good start, quick call to nice lady and she told us just to get a spare set cut from the spare set we had. Right then, all unpacked, we notice we are attached to Asda. Perfect. We are in the middle of Crawley town centre. Ooooh great (sarcastic great not as in yay great). We have six locks on the door leading into the apartment. Hmmmm, okay, well could just be overly cautious or we're going to die in Crawley. I don't want to die in Crawley. I needn't have worried it was all quite nice actually. Apart from the fact that the cleaners had left the windows open and the pigeons had shat all over the insides of them and it hadn't been cleaned. Go me cleaning and disinfecting window sills. Just like a home from home.

The day we left I mentioned it to the girl who tutted and said she's told the cleaners loads of times not to do that (by that I mean leave the windows open not poo on the window sills). After we left I got in the car turned to Dan and said I did say pigeon poo didn't I and not the words there was pidgeon shit all over the window sill. I still can't be sure of my correct phrasing.

Dan said, "How come bird crap is somehow less offensive than dog shit?" "What are you on about?" I asked him. "Well, if you told her that there was dog shit all over the window you would have gone absolutely mental over it. But bird poo, it's all okay."

He does make a good point.

So the apartment aside the therapy went well and we managed to concentrate on picking it all up whist minding two children. Zack wasn't really interested in it at all, in fact he was having a three day off week. Scarlett had a fan club. A lovely little boy who would come in each afternoon. Run over too her and shout "Hellllloooo little baaaaby." I think he was autistic. I let him have a cuddle with Scarlett, he was very good with her, until he covered her eyes with his hands. She wasn't that bothered by it, she just tried to bite his arm instead.

Whilst we were away Scazlah received her first DVD. Yep. Mickey flippin Mouse Clubhouse was purchased to keep her entertained in the pigeon poo flat. She also used Zack's little floor seat for some extra good T.V watching.

Zack did some extra good sitting.

Slept in his own room. Had his mum get in bed with him until he fell asleep. This has since lead to unasseptable behaviour (I know it's spelt unacceptable but I like to spell it as Super Nanny phonetically pronounces it), ahem, yes, unasseptable behaviour at bedtime. Bringing us back to square one with bedtime fights again. I gave in a couple of times and let him fall asleep on me. Dan caught me and asked me what was occurring, I lied and said he just fell asleep when I read to him. He knows I lied. I don't care. He was very cuddly cute.

So far we've managed to do the therapy almost every day. And Zack has fought bedtime almost every day. Reasonable success and a pigeon poo free home equals good times.

HelloIt's a Leckey Early Seating System. It says it can be used up to the age of four years but to be honest we have it on loan to try from the rep. Don't think we will be buying it as Zack is a bit too tubby for it and he isn't big or tubby for his age. It's good because you can strap it to ordinary dining chairs meaning you can go out for something to eat altogether as a family.I have just purchased something else for Zack that can be used on normal chairs and trains, planes etc. Its a Leckey Waistcoat it's brilliant.

Thanks, that's really useful. Do you get a rep out yourself, or is this arranged through your OT? I've found it hard to find out about useful bits of equipment because NHS therapists avoid mentioning things that can't be provided by the NHS. I bet there a loads of things that could help Tom, if I just knew about them!Emma

I just contacted Leckey and asked them to come and see me with the product and then I told the O.T that's what we were doing and it would be good if she was there to advise on suitability for Zack. I also told her we were funding it ourselves if it was of any use so she didn't mind coming out.

Yes I too find physios and OTs don't tell you about a lot of stuff so I tend to research for things. My latest is a potty chair for Zack. Not that he is ready for it but when he is, then so will I.

Best thing to do is look at Leckey, Jenx and other sites for equipment and contact them. Then tell your OT or physio that you want to look at whatever it is you are after and you need them to either arrange an appointment or be at the appointment you arrange.

Good luck with it all, I will try and do a post soon about equipment with lots of links, might be others who would find it useful.